By MOIRA MACDONALD,
Last Updated: January 18, 2011 6:14pm
How does the mother of an 11-year-old daughter with autism land in a civil disobedience class?
Not because of casual interest or scads of leisure time. East York mom Kiri Nesbitt turned to civil disobedience training last year after nearly eight years
battling the government for proper supports for her daughter Thais, and coming up empty-handed.
“I felt, ‘What else is there?’” says Nesbitt.
Within a few weeks of the two-hour workshop, Nesbitt and other parents of autistic children put their training into action, silently holding up photographs
of their kids in the public gallery at Ontario’s legislature last April before being politely but firmly tossed out. A week later the group got a meeting
with Laurel Broten, the minister of child and youth services.
The silent protest did not solve their problems, but, as Nesbitt says, “if you do it the right way it can at least get people’s attention and get them thinking.”
The legislature protest was followed by another at last summer’s G20 summit.
Considering the hell many parents of children with the brain disorder go through — burning through savings or selling homes to pay for treatment typically
costing $50,000 a year, marriages on the line from the stress, coping with a frustrated child’s outbursts or increasing remoteness while ignorant strangers tut-tut, and trotting their kids back and forth to specialists — it seems an extra injustice that any would risk arrest too.
But it’s that bad, says Sharon Aschaiek. A founder of the group Autism Resolution Ontario, which organized the civil disobedience training, and the mother of a four-year-old autistic boy, Aschaiek says she and others are “past the point of rallies and letter- writing.” They want waiting times for government-funded intensive therapy shortened to no more than a few months (families can wait years), a proper and impartial review of the so-called “benchmarks” used to determine which kids get treatment and for how long, as well as high-quality autism treatment in schools, call Applied Behavioural Analysis, or ABA.
“We are facing a massive social problem if we don’t help these kids now,” says Aschaiek, whose son Jaiden waited 26 months for government-funded treatment even though it’s recognized the earlier a child receives it the better.
It’s not as if the government has done nothing. Its autism funding has climbed from $44 million in 2003 to $187 million this year, including $25 million
recently announced which the government says will help 8,000 kids a year.
Advocates like Aschaiek are skeptical and say the funding and where it goes has not kept pace with needs. Services can also be inadequate or cut off too
soon, she says. More children are waiting for the most intensive autism therapy, IBI — some 1,520 — than are getting it — 1,400.
Autism numbers have also mysteriously exploded. The government says the figure is one child in 150 — compared to one in 10,000 some 30 years ago. A study two years ago found California autism rates had increased seven-fold in 11 years, between 1990 and 2001.
But why or how this is happening isn’t Aschaiek’s concern — only getting what autistic kids need and quickly. Which is why her group promises “bold events” leading up to the next provincial election.
Big government with bucks versus debt-ridden powerless parent staging a sit-in. Wonder who will win?